Before committing to participate in a trial it is important to think very carefully about what the trial will mean to your lifestyle.
Trials can involve major commitment with more travel to the hospital than normal, for extra tests, scans, and appointments. Whether you decide to take part in a trial or not, you should receive the highest standard of care and support available.
What are the advantages?
- You might be able to have newer and more effective treatments that aren’t available outside the trial.
- You will be helping to improve future cancer treatment for others.
- You may feel you’re doing something positive about your health and taking an active role in your treatment and recovery.
What are the disadvantages?
- You may have more frequent testing as well as treatment, which might be inconvenient. This can go on for a long time. Some people also find this makes them worry more about their cancer.
- You might not know in advance about all the possible side effects – the researchers themselves might not know them all yet.
- If the trial is randomised you won’t get a choice about which treatment you have.
- If the trial is blinded, you won’t know which treatment you are getting.
- The new treatment may turn out to be no better than the existing treatment.
- There is the risk that the new treatment may not help you, even if it helps others.
Are clinical trials safe?
If I go on a trial, how likely is the treatment to work?
The standard treatment may prove to be better than or just as good as the treatment being tested or the new treatment may show to have unexpected side effects.
Your research team can talk through any concerns you may have and help you decide whether taking part is right for you.
Can I stop the trial at any time?
Tissue and blood sample storage / biobanking
Biobanks aim to improve the prevention, diagnosis and treatment of a wide range of serious illnesses, including neuroendocrine cancer. It allows scientists to better study the cells to understand how our genes interact with our lifestyle and environment to cause disease. It may also provide new ways of treating diseases, or spotting them earlier.
What is placebo?
A placebo is usually combined with the standard treatment in most cancer clinical trials. A placebo-controlled trial compares a new treatment with a placebo. The two groups of patients then can’t be biased, because they won’t know if they are getting the placebo or the new treatment.
If you are considering participating in a clinical trial ask your team whether it involves the use of a placebo and the likelihood of receiving the drug being studied or a placebo. Also, ask whether there will be an opportunity to receive the study drug at any point in the trial.
Drug repurposing – giving drugs a second chance
In short, this is finding a new use for “old” drugs. New treatments for neuroendocrine cancer are few and far between, so it is important to be aware of all the different ways that therapies might become available in the future. Repurposing means looking at existing drugs and therapies to see if they could be new treatments for cancer. Significant savings can be made in time and money because typically, the safety, efficacy, and toxicity of an existing drug have already been extensively studied. One example of successful repurposing is thalidomide, previously used for morning sickness, now used to target multiple myelomas (a group of rare cancers).
Read more here.
What are the main areas of Neuroendocrine Cancer research in the UK?
At any one time, there are many studies underway in the different fields of healthcare around the UK. Some of the main studies in laboratories are focusing on better understanding the genetic and immune landscape of neuroendocrine cancer cells. Looking at current treatments in new ways and evaluating whether there is a difference in outcome depending on the sequence treatments are given in, is another area of study.
There are also some trials in imaging looking at new tracers (radioactive injections) to further improve the images in PET scans.
Neuroendocrine Cancer UK is a UK wide charity solely dedicated to providing support and information to those affected by Neuroendocrine Cancer.
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